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Yolanda S Castañeda, Eileen E Birch, David A Leske, Sarah R Hatt, Laura Liebermann, Jonathan M Holmes; Quality of Life Concerns in Parents of Children with Esotropia. Invest. Ophthalmol. Vis. Sci. 2015;56(7 ):5204.
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© ARVO (1962-2015); The Authors (2016-present)
Esotropia is a common form of childhood strabismus, but the effects of esotropia on the health related quality of life (HRQOL) of affected children and their families are poorly understood. As part of a larger research effort to develop patient-reported outcome measures for pediatric eye conditions, we interviewed parents of children with esotropia to identify the specific concerns affecting the parents HRQOL, distinct from concerns affecting the HRQOL of the children themselves.
35 children with esotropia (aged 2 to 17 years) were recruited, along with one of their parents. Esotropia types were: accommodative or partially accommodative (17; 49%), infantile (7; 20%), non-accommodative (6; 17%), consecutive (2; 6%), 6th nerve palsy (1, 3%), Duane syndrome (1; 3%), and mechanical (1; 3%). 18 (51%) had a current or previous diagnosis of amblyopia and 25 (71%) wore refractive correction. Individual semi-structured interviews were conducted with the parent of the child. Transcripts from recorded interviews were independently evaluated by 2 investigators using NVivo software. Specific HRQOL concerns were identified and coded by assigning to themes. Discrepancies were resolved by discussion. The frequency with which each theme occurred was calculated.
Overall 18 HRQOL themes were identified, describing the effects of specific concerns and worries on the parent’s own HRQOL. The top concern, mentioned by 31 (89%) of 35 parents, was Inconvenience, especially regarding taking time off work. 30 (86%) of 35 parents mentioned concerns of Worry regarding treatment e.g. worrying that treatment won’t work or that other options should be explored and Negative Emotions such as finding it emotionally hard or scary to deal with the condition. Having to Compensate or Adjust for their child’s eye condition e.g. extra supervision, protecting the child, making sure they sit at the front in class; and problems related to Treatment were each mentioned by 28 parents (80%).
Parents of children with esotropia express a range of concerns affecting their own HRQOL, such as having to make adjustments to help their child, worrying about treatment and experiencing negative emotions. Identified concerns in esotropia suggest that pediatric eye disorders may have pervasive effects on multiple aspects of family life, and these concerns will be used to develop a parent HRQOL instrument.
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